Noma: the disease of poverty that eats away at faces

BarcelonaSufyanu was 3 years old when he arrived at the hospital in Sokoto, Nigeria, where noma patients are treated. He was suffering from this disease that mainly affects malnourished children, which starts as an infection in the gums and, without proper hygiene and knowledge of how to treat it, in a matter of days becomes a gangrene that literally devours the tissues of the face. Ninety percent of noma patients who do not receive proper treatment die, but Médecins Sans Frontières (MSF) teams were able to nourish the boy, give him antibiotics and treat his wounds. They saved his life, but not his face: he is missing his upper lip and part of his nose. When he is older he will be able to have surgery to reconstruct his face so he can eat and interact more normally, but he will have to live with these terrible injuries and the stigma they carry for a few years. Noma is a preventable disease with proper nutrition and good oral hygiene, and in case of infection it is treatable with antibiotics if you act in time. Another thing is that, due to hunger, miserable living conditions and lack of access to healthcare, it does not seem likely to disappear soon from many regions of the planet.

Children under the age of 7 are more likely to develop noma: malnutrition and a weak immune system, poor dental hygiene and other diseases such as measles and malaria make them particularly vulnerable. The last World Health Organization (WHO) estimates, from twenty-five years ago, estimated that it affects 140,000 children every year, in the poorest countries of Africa and Asia.

Although it is a well known disease from a medical point of view - Hippocrates described it in the 5th century BC - and with a simple treatment, it is completely forgotten: it is not even included in the catalogue of neglected tropical diseases, as denounced by MSF. The world prefers to look the other way, while thousands of children die every year from an easily preventable disease.

A "brutal disease"

"It is a brutal disease that progresses very quickly: first the gum becomes inflamed, then the soft tissue of the mouth becomes infected and a hole in the cheek appears. And suddenly the cheek explodes. Parents can't explain what has happened," explains Veronica Emeh, a nurse at Sokoto hospital, one of the few centres in the world specialising in noma where MSF collaborates with the Nigerian Ministry of Health to provide free care to children in remote villages who do not have easy access to medical treatment.

"Many parents don't know about the disease and when they see the first symptoms they don't know what to do: most come from very poor communities and can't afford transport to hospital. Sometimes they only seek help from healers and when they end up bringing the child to us the damage is already terrible". That is why it is vital to sensitise communities to recognise and detect the disease as the first signs appear.

Gangrene can affect the bones of the jaw, the nose and also the eyes. They have difficulty swallowing and some need painful physiotherapy just to be able to open their mouths. "It's very hard to see children in this state, but I make it a point not to be noticed, so they don't lose hope," the nurse confesses. "And the worst thing is when reconstruction surgery doesn't work - when they've been through all this, through the operating theatre, through all sorts of painful procedures and they've been without moving their heads for weeks, and in the end it doesn't go well."

More forgotten with the pandemic

In March last year the hospital in Sokoto closed its doors because of the pandemic. They could not admit new cases and patients who could withstand the transfer were sent home. Only the most acute cases were allowed to stay at the hospital. In April they were able to readmit them, but at least one child died before receiving treatment and many took longer than expected to reach the hospital because of restrictions on mobility between regions. Inside the centre, hygiene measures had to be tightened because of the increased vulnerability of Noma patients to the coronavirus.

Reconstructive surgeries have been suspended for more than a year and it was only a few days ago that a Nigerian team of surgeons and nurses were able to return to work. "We are still adapting the procedures to covid-19. We have already received fifteen patients who have been waiting months for the operation. The Nigerian team has years of experience working with international teams, but due to travel restrictions the more complicated operations, involving the nasal tract or jaw bones, we cannot yet do. Eight more patients will be waiting for an outside team to arrive in June to operate on them," explains Samuel Joseph, MSF's director of nurses at the centre. While 129 patients were operated on in 2019, only 73 were operated on last year. He also acknowledges that it has been difficult to assist people from remote villages desperately seeking help from afar.

Success stories

As hard as this disease is for the children and their families, there are also examples of success. In some cases, reconstructive operations leave no trace of the injuries. Many patients are able to speak and eat normally again. "One of the cases I remember most is that of a child who had lost his nose. We reconstructed it and when I went to his village to do the follow-up, everyone gathered around me as if I was a God. Because they knew who had helped him. Before, the boy was discriminated against, he had stopped going to school because he was bullied. When he came back, most people didn't even recognise him," she says.